Nicholas Fogelson, M.D., FACOG, Endometriosis Specialist, Advanced Pelvic Surgeon, Minimally Invasive Gynecologic Surgeon.
City: Portland, Oregon.
Philosophy: I strongly believe that endometriosis is not one disease, but rather are a constellation of states of similar but not identical disease states. This concept is strongly supported by the very large number of genes that are tightly bound to the disease state, which is more characteristic of a multifactorial and multiorigin disease than a single disease entity. Ie. calling endometriosis one thing is like calling cancer one thing.
Right now the predominant theory is that of mullerianosis, suggesting that endometriosis is a defect of embryogenesis. This theory is supported by a variety of data. At the same time, we also have evidence of environmental factors that seem to promote endometriosis, either through actual genesis of disease or through worsening of the already existent disease and therefore making diagnosis more likely.
The variable response to various therapies among different patients is also suggestive that there is more than one underlying disease state. Ie some patients respond completely to surgical excision and have very little benefit from medical therapies, while some other patients have near-complete cessation of symptoms while on progesterone suppression. Some patients have severe pain, others have no pain, and may only present with infertility. Furthermore, the variability of the appearance of endo surgically also suggests more than one underlying origin. For example, there is a clearly a subtype of endometriosis that presents with high grade rectovaginal deep infiltrating endometriosis, while sparing the ovaries and other peritoneal surfaces. Other patients may have endometriotic implants studded throughout their pelvis, many superficial with perhaps some small deeper areas, without advanced deep disease in any particular area. Again, this suggests a different origin of disease rather than a clinical variation of an identical disease state.
At this point, our understanding of the disease is incomplete. My approach is to individualize care to each particular patient in efforts to improve her quality of life to the maximum. Most patients seek me out for excision surgery, which I do a great deal of. And at this point, excision surgery is the optimal treatment we have available. At the same time, it is critical that we keep an eye out to a better future understanding of the underlying disease that may open up other effective treatment modalities.
Medication: Most of my patients have already been on medical therapies with other physicians and have not found relief, leading them to seek out endometriosis surgery. My primary treatment modality is excisional therapy, but we may augment that with hormonal suppression postoperatively in some cases. Usually, this is only for 3-6 months postoperatively, but in some cases, patients may choose to be on suppression for longer. While in theory, a patient who has had full excision of disease should not benefit from medical therapy, there are some data that do suggest a decreased frequency of recurrent pain in patients who do use progesterone suppression after surgery. These data may be biased by the inclusion of surgery that is not as complete as what is typical in my practice and other expert-level surgeons’ practices, and this may explain this result.
I typically do not use GnRH modulators such as Lupron or Orilissa, as their side effect profile is often worse than the benefit gained, and a minority of women may experience long term harm from their use.
Approach to Persistent Pain: Every case is different, so there can be no one specific approach. Most patients have thorough excision of endometriosis as part of their treatment. Most experience substantial relief from this, but over time some may have recurrent pain.
All patients should be evaluated by a skilled pelvic PT and get support for pelvic floor pains. When this is severe pelvic floor botox may be appropriate. We also have to consider urinary tract sources of pain such as interstitial cystitis. When appropriate, some patients may have repeat laparoscopy if we believe there may be recurrent or residual disease (particularly if a patient comes in after surgery from an outside surgeon. We also must evaluate other neurologic sources of pain, such as vascular or ligamentous entrapment of pelvic nerves (ie nerve roots, sciatic, femoral, obturator, pudendal, etc.). In limited cases, direct neurolysis of affected nerves may lead to relief. When a persistent pain can be neurologically localized but is not addressable surgically, or surgery has failed to relieve the pain, direct neurostimulation of affected nerves can have substantial efficacy in decreasing or even eliminating pain. We also encourage all patients to eat a healthy anti-inflammatory diet and to get regular exercise.
While some patients travel to see us, many patients come from our local area and continue to work with our practice ongoing for their routine care as well as any issues of recurrent pain. We are committed to continuing to care for all of our patients, as long as it is practical for them. While many patients do travel for surgery, we think that the best care comes with an ongoing relationship with a physician who not only can operate but has a wide base of knowledge in pelvic pain, and can help manage care actively.